Rare Disease Day
The first Rare Disease Day was celebrated on February 29th, 2008 - the rarest day given that it only occurs every Leap Year. Since then, Rare Disease Day has been celebrated on the last day of February. On this day the world comes together to show support for the 400+ million people inflicted by 7,000+ rare diseases globally and those who care for them! On Rare Disease Day in 2023, Osmosis from Elsevier launched our global Year of the Zebra initiative to drive more awareness of and support for rare diseases in the healthcare community.
Importantly, that first Rare Disease Day back in 2008 marked the 25th anniversary of the Orphan Drug Act, which revolutionized the way treatments and cures are developed for rare diseases. Today, the Year of the Zebra is a renewed commitment to achieving an inclusive healthcare system, to educating as many people as possible, and to leveraging Osmosis’ far-reaching network of followers and subscribers to ultimately drive research, action, and improve patient outcomes.
Moving forward, each month, we will continue to feature one new video highlighting a rare disease or “zebra” in our monthly Year of the Zebra newsletter. That video will also be featured on our YouTube channel.
Please help us to continue to spread the word about this worthy and important initiative in the year ahead.
Celebrating 3 Years of Rare: Open Access Journal
Rare is a Gold Open Access journal that publishes international research on direct clinical and psychosocial care, diagnosis, pharmacology, public policies, or ethics. Rare includes rigorously peer-reviewed articles on research that improves the well-being and quality of life of patients with rare diseases as well as undiagnosed, unsolved disorders and their families. Through Rare, researchers, healthcare professionals, policymakers, and the rare disease community have a multidisciplinary open-access scientific journal that covers all aspects of living with these disorders. The Editor in Chief is Prof. Dr. Wendy van Zelst-Stams from Radboud University Medical Centre in Nijmegen, The Netherlands.
This month's Zebra is brought to you by
I am a Zebra/I know a Zebra
As part of Elsevier's ongoing commitment to the Year of the Zebra initiative, we continue to add new videos to our I am a Zebra and I know a Zebra series, in which people from around the world tell us firsthand how a Zebra condition has impacted their life - either from having a Zebra condition (I am a Zebra) or knowing someone with a Zebra condition (I know a Zebra).
Find our full video library on our YouTube channel: I Know a Zebra and I am a Zebra (Year of the Zebra)
Raise the Line Podcast Guests
Fighting the Deceiving Label of ‘Rare’: Zainab Alani, Fourth Year Student at University of Glasgow School of Medicine and Rare Conditions Advocate
“There's a reservoir of hope, energy and optimism many of us have that we may not know about until we're really tested,” says attorney and author Scott Reich. The heavy test he and his wife Ilissa have endured for the past three years started when their infant son Eli was diagnosed with a rare brain disorder called FOXG1 Syndrome which causes severe seizures and impedes normal movement, speech and sleep, among other problems. Scott vividly recalls the moment when Eli’s doctor explained there was no hope for treatments or a cure. “I just felt an instantaneous gravitational pull that despite the intense emotion that overtook us in the doctor's office, we were going to do something about it.” That “something” includes starting the nonprofit foundation Believe in a Cure which is currently funding over fifty research and development projects worldwide focused on this pernicious disorder. Join us for this enlightening conversation with host Shiv Gaglani to learn about the multi-pronged strategy scientists are pursuing to overcome the mutation in this so-called master gene, the promising results emerging from preclinical programs and the supportive global community Believe in a Cure has helped create for the hundreds of other families fighting the same battle. Mentioned in this episode: https://www.webelieveinacure.org
x
Sign Up for the Year of the Zebra Newsletter
Fill out the form below to sign up for the Year of the Zebra monthly newsletter to learn about a new rare disease every month.
x
Sign Up for the Year of the Zebra Monthly Newsletter
x
Sign Up for the Year of the Zebra Newsletter
Fill out the form below to sign up for the Year of the Zebra monthly newsletter to learn about a new rare disease every month.
